A-Wonderous Boy
A personal blog about a journey of parenting a wonderful boy who happens to have Treacher Collins Syndrome (TCS). Bringing awareness to the world about how special and wonderful these children truly are!
Saturday, June 28, 2025
2 Books and Movie
Saturday, September 30, 2023
Little A...Big Update 2023!
The big update is...Little A is a Big Brother! (sorry we are 6 months late on the news--adjusting to being a family of 4!)
On March 14, 2023, Little A was promoted to Big Brother A. He is so in love with Baby S. The journey to Baby S was longer than we wished and full of anxiety. He is worth all of that and we can confidently say he does not have Treacher Collins Syndrome like his Big Brother.
To backtrack a moment, when we first told Little A he was going to be a big brother, he was so excited! He would talk and sing to my belly sometimes. He would impatiently ask when he is coming out. For Hanukkah we had gotten him a doll to practice being a big brother. For a few days he took very good care of her. He had us put his extra BAHA headband on the doll since she had little ears like him. One day as we were leaving grandma’s house, he left the doll on the couch, turned to grandma and said “I am too tired, you take care of her grandma”. I quickly knew he would have days where he was really interested in the baby and other days where he just needed his space. All would be normal feelings. Little A helped grandma and dada paint the baby’s bedroom. He helped Pop-Pop put together his new bedroom furniture as he somewhat willingly allowed us to give the baby the old furniture.
On Monday March 13th I had a few sporadic contractions throughout the day, but we didn’t mention anything to Little A. Late that evening while sleeping my water broke. I called Grandma to come over and we left feeling a lot of emotions. I was worried about Little A waking up and us not being there and then not seeing him for a couple of days. According to grandma, he woke a little while after we left and was looking for me. It took her 2 hours to get him back to sleep because he was already feeling all kinds of emotions. On March 14 at 6:45pm, Little A was officially a big brother and wanted so bad to come see us right then. Unfortunately the hospital we delivered at did not allow little kids to visit--partially because they had not changed their policy after covid yet and partially because kids were not allowed during flu/rsv season (october-march). As much as I was filled with love and excitement with this new little guy in my arms, I felt sadness that my big little guy wasn’t with us. I am not sure who it was harder on me or Little A being at the hospital for so long. By long I mean from Tuesday to Thursday morning. Time was ticking by so slowly. We were texting grandma for updates on Little A and he was getting all of the attention he needed. He proudly wore a big brother shirt to school on that Wednesday (picture below). On Thursday March 16, we video chatted before he went off to school and we both ended up crying from missing each other so much. I told him to have a great day at school and we would be home waiting for big hugs when he gets home. When the baby nurses came in and gave Baby S the all clear to go home, they told us discharge happens between 11am and 3pm and asked when we wanted to go. Jeff quickly said ASAP because he could tell I did not want to be there a minute longer. They had us sign papers, I got Baby S and myself dressed as fast as I could. It felt like forever waiting for the nurse to come back so we could leave. It kind of felt surreal this time to be walking out the door with my baby in the car seat this time. Felt surreal to know that night I would be sleeping in my own bed with my baby in the bassinet right next to me. No long nights worrying about a baby in the NICU. No, what felt like long drives back and forth to hospital to watch your baby hooked up to monitors. Yes, I still have to be up every few hours to feed him and yes there were many sleepless nights and days. They were very welcomed sleepless nights and days and chaos because I had all my boys by my side.
When we arrived home with Baby S, Little A was still at school, so we had time to get settled in first. On the way home from school, Grandma helped Little A pick out balloons to give to the baby. The baby had bought a special present for his big brother too. Baby S was sitting in his seat and Little A, shyly came over to see what was up. You could tell he was flooded with mixed emotions of excitement and what did we get ourselves into. We didn’t force him to sit down and hold him or even interact with him. We just followed Little A’s cues and let him take his time. We gave him the gift and he was excited for a police car to play with. Then throughout the afternoon he got a bit more interested in the baby. As I was holding him, Little A peered over the couch and said, “I love his ears, they are small like mine”. We smiled and agreed, all the while it broke my heart a bit. Yes, they are small for now, but Baby S won’t need BAHAs and he won’t go through what you have and what you will go through. I was waiting for Little A to ask if Baby S needs BAHAs like him, but it still has not come. The next morning, Little A was finally ready to hold and snuggle his baby brother (see picture below). It just melted my heart to watch Little A throughout that day fall into this big brother role so easily.
Watching Little A the last 6 months grow into a great big brother each day has been amazing. I know they will have a great bond. There are moments when he struggles because mama can only do so much at one time. There have been tears and yelling when I can’t drop what I am doing in the exact moment Little A wants and my own tears when I feel like I am failing both boys. There have also been smiles and feelings of pride from Little A and myself when I feel like supermom. Sometimes if I am cooking dinner, putting away laundry or just busy with another household task, Little A will run over to Baby S to hug him, play with him or simply plug him up with a binky. Little A loves to hold him and tries to carry him (with support from adults right now). Six months later and he still loves to have his brother come along to drop him off at the bus stop or come with mama to get his brother from daycare. Little A climbs in the crib in the mornings to sing and hang out with his brother. You can just feel the love.
Monday, July 5, 2021
Little A's 2021 Update
Who would have thought that while we are still navigating these uncertain times, we would be so busy and not have time to write about what we are doing. The best decision we could have made in the year 2020, was sending Little A to school. He goes to school three hours, three days a week and is loving it! He has the routine down pat that Dada drops him off and Grandma picks him up. I recently learned, it will confuse him if you make a slight change to that routine. I had taken a day off of work for an appointment, so decided to go with grandma to pick Little A up. As the toddlers came out of the building with their teacher, I was standing there waving at Little A, but he was not running towards me like I expected. He was just frozen and staring at me and probably thinking “where is grandma?”. His teacher and I were laughing and it wasn’t until grandma stepped out of the car too that Little A was ready to walk and get in the car. Going to school has accomplished what we hoped it would. He is talking more at home, but we are still working on talking to his teachers at school. He loves music time and you can catch him singing songs while playing. While he is talking more at home, he isn’t always talking to his teachers. He will let them know, usually by pointing, if he needs their help reaching a toy he wants, but he doesn’t let them know when he needs a new hearing aid battery. At home if he can’t hear out of it, he will pull it off the band, bring it to you and say “new battery”. One day at pickup after his teacher was telling grandma that Little A was not a good listener today; that’s when Little A told grandma he needed a new battery in both hearing aids...his teacher felt horrible. We assured her it is ok and that we are trying to teach Little A to tell her like he tells us at home. Even though he wasn’t always talking to his teachers or other kids, Little A still got more comfortable as the school year went on and came into his own there. He was doing “typical” two year old things such as making a mess with friends and ignoring his teachers. He loved to follow a little boy Leo around and sometimes get into some trouble. They would bump their little tikes cars into one another. There were times when Little A’s hearing aids worked just fine, but he wouldn’t do what his teachers’ asked him to (usually this happened around diaper change time). Eventually he would do the task for his favorite teacher. Naturally grandma would tell Little A if she gets a good report at the end of the day there would be a chocolate treat for him in the car. This helped him become a great listener! We did often get a report that Little A would be a great helper, especially during clean up time. (I wish he would clean up his toys at home). He would be so proud of the stickers he received on his shirt and show them to us all when he got home. He made friends even though he is still a shy kid. We have been told a few times that someone is always looking for Little A on a day doesn’t go to school. When we took him to a birthday party for a little girl in his class, everyone (including a lot of the parents and a grandma) knew Little A. Little girls took him by the hand and brought him to the playhouse to play. It just warmed my heart to see him with his little friends. Reminds you that at his age kids don’t judge each other. As long as you are nice, don’t hit and know how to share; people will like you. Needless to say, I can’t wait to see what the 2021-2022 school year has in store for Little A!
Since it has been about a year since our last post, a lot has happened on the covid-19 front. The biggest thing: everyone except the children are vaccinated in our family! This means we are one step closer to normalcy. At first, we only did outside gatherings still in order to protect the little guys better, but now that school is over we are allowing some inside time too. He gets to play with his cousins without wearing his mask all of the time. We are starting to allow him to come on an errand while wearing his mask. He knows he can’t touch the cart until it is cleaned and that he has to use hand sanitizer or a wipe afterwards. The excitement on his face when you tell him he is going to the supermarket is priceless. Thanks to vaccinations, speech therapy is back in person! It started off just one of the sessions and now is only in person. Oh what a difference it has made...Little A gets to interact with his therapist and is doing much more talking with her than he ever did on the ipad. He is showing her the silly side of his personality. One day while they were playing in the yard, his hearing aids fell down, Little A proceeded to run around saying “I can’t hear you!” This will be a productive summer for Little A’s speech--the last couple of months working with this wonderful speech therapist!
When a child turns three they start to transition from early intervention to CPSE (the school district you live in starts to cover services). Since CPSE services are not offered in the summer for all cases, when you first transition you have the option to defer the services to the fall and continue E.I for the summer. That is what we are doing so Little A can spend more time with his current speech therapist. The CPSE process required Little A to have three evaluations: Speech, educational and psychological. I know you are probably thinking the same thing we were--how do you do a psych evaluation on a three year old. Basically, for all of the evaluations the person played different kinds of games with Little A and looked/listened to how he responded in order to assess him. Just as we expected Little A showed how smart he was and his trouble area was just his expressive speech. The speech evaluator’s report said that Little A was able to string three to five words in a sentence, but not all of the words were intelligible. In other words, they could tell he was forming a sentence and talking about something, they just didn’t always know what that something was. Since I am a former special education teacher and know the process, I was ready to fight for whatever services I thought were necessary, but I quickly found out the school district we live in must understand the importance of providing services at a young age. They answered every question I had on my list before I even got the chance to ask them. Little A will continue to get to see our favorite audiologist Dr. Ben every 2 months. The only difference is only the visit will be covered starting in the fall and all of the batteries/accessories will be out of our pockets now (we were spoiled with how much NYS E.I covers--so we won’t complain too much). While at school, Little A will continue to receive speech 2x a week with a new therapist and he will also have a teacher of the hearing impaired 2x a week. This teacher will not only work on goals similar to his speech goals with Little A, but will help the teachers understand the workings of his hearing aids. We look forward to seeing how these services continue to help Little A grow and are so grateful for everyone who helps him grow along the way of his journey.
Before we worry about the fall, we have a fun summer together! After the longest school year of my seven year teaching career, I am looking forward to spending quality time with my little boy. We have had a great first week of summer so far. Little A loves the pool and enjoys swimming with his cousins at grandma and Pop-pop’s pool. He knows he has to have his puddle jumper life vest on and an adult before going close to the big pool. He spent hours in the pool to the point that his fingers and toes were wrinkled like raisins. He only got out for a few snacks and thought it was funny when we allowed him to snack in the pool while on the pool float. The hardest part about the pool is he doesn’t have his hearing aids on, but he has learned to adapt. If you yell loud enough you may be the right frequency for him to hear or he holds his head to your lips while you talk. He had a 5 minute long conversation with grandma this way one day. It does make me nervous though when he is around the pool and can't do much, so we just keep extra eyes on him. One day we were invited to a friend’s town pool. This kiddie pool was awesome. It had 2 little water slides and those mushrooms that make a shower of water. He loved going down those slides over and over again. It also had a splash pad with all kinds of squirting features and one of those buckets that dumps every few minutes. To my happy surprise, he loved it all. Little A is my little water baby and it is hard to get him out of the pool. At home, he even pretends to play “pool” all of the time. A big bean bag chair is the pool, and the trampoline is the ladder. He has a blanket that is the pool cover that he takes on and off and he uses a strainer to “clean” his pool. Little A even tells you that he is Pop-pop and taking care of the pool. We also purchased a small splash pad that you hook up to a hose for the backyard. He had a lot of fun exploring it the other day. Besides swimming and water activities all summer, I just signed Little A back up for Gymboree class. I am sure he will have a blast on all of the equipment there and hopefully it tires him out too! We plan on more playdates with friends and family this summer and maybe even a trip to an amusement park. It will be a summer full of fun--I just hope it doesn’t go too fast!
Saturday, March 13, 2021
Tantruming Toddlers
We all know it is called the terrible twos because toddlers are trying to find independence and test you. They have many tantrums for all kinds of things. At the time they are very frustrating, but looking back some of the tantrums were for very funny reasons. My friend Brittney and I are constantly texting each other with reasons why our toddlers have had a tantrum and decided to make a list of the ones we thought were funny.
Threw a tantrum because...
I poured chips into a container but he only wanted to eat them out of the bag.
I would not allow him to drink day old milk
the roomba went off
daddy went to work
the channel was changed when he was watching Mickey
Dada wouldn’t let him go wake Mama in the morning
Dada was in the bathroom and Mama wouldn’t help him get in
he didn’t want to sit in the high chair anymore, but turned into a tantrum because he didn’t want the high chair to be packed away either.
Mama put the batteries in his hearing aids in the morning
Mama finished her coffee and didn’t want more, no matter how much he persisted.
he wanted to take a bath in the middle of the day
he wanted the green cup not the blue cup the milk was already in
Mama threw his diaper away in the diaper genie
Dada went to pick up dinner and he thought Dada was playing downstairs without him
Mama wouldn’t let him poke her in the eye
He wanted to use the skimmer to clean the pool but the pole is way bigger than he is.
grandma and mama wouldn’t let him walk down (or fall down) a hill while they were hiking
grandma and mama wouldn’t let him sit at the picnic table and wanted to go on the hiking trail since that was the reason we went to the park
mama took away the book that he ripped yet again
mama changed his diaper.
Dada changed his diaper, but he wanted mama to do so.
The pop tart box was empty and in the recycling bin and maybe he wanted a pop tart
Daddy combed my hair
Mommy wanted me to take a bath
Daddy won’t play with me.
Didn’t want to go in his carseat and leave grandma’s house
Daddy won’t let me play with the beach towels in the house
Mama wouldn’t let me play with the electrical outlet at the Audiologist’s office
Mommy and Daddy won’t allow me to sit in my high chair all day long
We lost power in the middle of his TV show
an adult asked him to brush his teeth or get dressed
He had poop squishing out of his diaper, but he his show wasn’t over
Thursday, August 20, 2020
Little A's Quarantine Update 2020
We have quarantined with Little A’s Grandma and Pop-pop the whole time which was good not only so we could do our jobs, but also for Grandma’s sanity. Little A had started Gymboree classes a few weeks before all of this and was really starting to love it. It was nice to continue to practice motor skills while practicing some new social skills. We understand obviously why everything needed to close, but still made us sad he could no longer go. Grandma and I can teach him all kinds of academics, but he needs to be around kids his age to learn social skills. We hope he will be able to go to a toddler program in the Fall. Sorry for the little tangent….so back to quarantining with the grandparents being a great idea. When it all started, Jeff was deep in his busy season and really needed to focus 10-12 hours of his day on work. I am a teacher and thought since we weren't video chatting with the kids I would have more flexibility, but I was quite busy everyday. Even though Little A has started to play independently he still needs/wants a lot of attention. Here comes Grandma to the rescue. The two of them learned and played together everyday (it helps that Grandma was a preschool teacher). From my perspective, it was harder to be home and watching them play...made me wish even more that I could join in too. Grandma was watching Little A while we went to work before all of this happened. One day, Grandma needed a break so Jeff and I tried to balance our schedules while watching Little A. That didn't work out well. Jeff forgot I had a staff meeting video call and had taken a work call at the same time. Thank God during all staff meetings I could keep my camera off and mute myself. It was hard to divide my attention with a toddler who didn't want to sit at the table. I guess I had forgotten to buckle him into the booster seat because I looked up and he was sitting on the table next to my laptop. In other words, a day without Grandma didn't go well.
Little A has continued to receive speech services, but just like everyone else it has gone virtual. He logs into Zoom for 30 minutes twice a week. It started out well and his speech therapist was being very creative. Now we are all kind of over it. It is hard to come up with ideas to hold his attention so he will sit in front of the screen for that long. When it was in person, he was able to move around a lot more to bring his therapist things that he wanted to play with that day. It is harder to follow him around with an iPad and can make the other person very dizzy. Also, Little A sometimes just talks softly, so we are constantly repeating what he said to make sure his therapist heard. Other times our activity was too good of an idea and he is too focused on what he is doing that he isn’t even talking. My favorite activity that we have done is making ice cream in a bag and Little A’s favorite part was eating the ice cream. You put the ingredients (half and half, sugar, vanilla extract) in a bag, put that bag in a bigger bag with ice and salt and shake until you get ice cream. He loved pouring in the ingredients, but told us no shake. When it was time to eat, he asked for whipped cream and chocolate chips on top. We have also played with Play Doh, sand and water a lot. Sand made a big mess in the house, but that was the only way to get him to come back inside from the sandbox in the yard in time--bring some sand with us. Little A loves water and enjoys pretending to wash animals in the “bath”. We also have read many books and have made them as interactive as we can. One book has velcro animals that come off the page, or we find toys/action figures/animals that can be used with each page. He has met his goals along the way during his Zoom speech sessions, but it still isn’t the same. It is harder to work on what his lips/mouth should be doing for certain letter sounds when he doesn’t want to look at the screen. Little A used to look forward to his therapist coming over and would wait by the door to let her in. Now he looks forward to clicking the “bye” button to end the Zoom session. We hope soon that speech can be in person again, even if his therapist has to sit 6 feet away with her mask on. We are lucky to have enough toys that can be used in his sessions. It is much easier for Little A to interact in person than over Zoom. Our fingers are crossed that the Fall will bring back some “normalcy”--whatever that may mean.
Much of our days are spent either playing outside, going for walks or in the pool. He loves to be outside and would spend all day there if we let him. He rides a kids ATV and wants to be just like his big cousin. He also enjoys the swings and the sandbox in Grandma’s backyard as well. We have attempted to take a couple of walks/hikes. The first one at a local park, Little A was distracted right away by the picnic tables that were near the entrance of the trails. He kept saying “picnic” and trying to run to sit on them. In hindsight, we should have disinfected one and let him have a snack before we started. We ended up having to carry Little A through most of the trail until his mind was no longer on the picnic table. I’m glad we chose the shorter path. This path had a rocky stream that we allowed Little A to put his feet in. Of course Little A wanted to go further into the stream to try to swim. Needless to say, we carried him away from the water and a good portion of the path back to the car. Another hiking path we did a couple of times is right around the corner from Grandma’s house (well about a mile away). The first time, which was a 90 degree day, I thought it would be a good idea to walk to the path. We convinced Little A to ride in the stroller for this part at least. We brought his little doll stroller with his bear sitting in it thinking he would do a lot of walking if he had something to push too (plus a lot of walks around the block at home include Little A wanting to push his own stroller--this usually does not turn out well). He was walking fine until about halfway through the path, he kept going to the edge where it drops down a bit and telling us he wanted to go down. At this point, we convince him to go into his stroller for a snack. The first half of the path is shaded, so even though it was 90 degrees out, the sun wasn’t beating down on us. A lot of people just turn around and take the same path back to where they started, but my bright idea was to continue around to the other part. I did not realize that there was no shade on the other half of the path and that it was a lot grassier than the first part too, making it harder to push the stroller and, oh yeah, did I mention it was uphill a bit? Little A ended up napping in the stroller for the rest of the hike back to Grandma’s house and Grandma and I can’t even describe the amount we were sweating. By the time we got back, we had walked 3.5 miles in 90 degree weather. Recently we decided to go hike on the same path, but it was only 80 degrees out and we drove to the path. We only did the shaded half of the path--so a round trip of 2 miles. Little A walked about 1.5 miles, eating snacks most of the way. He loved dragging sticks, and looking for animals (birds, squirrels, bunnies) and leaves. He took a good nap that day! When we aren’t going on adventures, it is nice to just play at home some days too. He recently got a new playhouse for the yard, which he loves to push the doorbell and pretend to play. He even “mowed” around it with his bubble mower while we mowed the actual lawn. We are trying to help build his independence and practice speech with everything we do and a good way to do this is have him help in the kitchen. Little A likes to pour his cereal and milk (with help) into his own bowl. He is also really good at spreading the sauce and adding cheese to a pizza crust. Just this morning, he wanted to put the applesauce into the reusable pouch himself--so I held it open as he would put one spoonful into the pouch and one spoonful in his mouth until the cup was empty. He was so proud of himself. As we do these things, we are making him say the actions he is doing. With everybody working from home, Little A gets to spend more time with his Dada as well as his Pop-pop. Pop-pop may not admit it, but he definitely loves his Little A daily interruption--as long as he is not on a conference call. Sometimes Little A is asking him to fix something, sometimes he is sharing a toy and other times he is seeing what snacks Pop-pop has in the office. Little A gets to see more of his Dada too. It was busy season when this started which meant Jeff would be leaving the house way before Little A was even up and returning by the time we were asleep. Now, we take turns who gets up with Little A in the morning and gets his breakfast ready. Since Jeff’s commute is now down the stairs to his office instead of over an hour to the city, he has time to snuggle with Little A watching Mickey Mouse or T.O.T.S. in the morning. He is also able to sit down to dinner with us each night too! Something he didn’t get to do very often when he had to commute to the city because Little A ate dinner before he got home on a normal day. As much as COVID-19 sucks (and boy does it right now feel like a rollercoaster still), this was time with Little A that we were so lucky to have. To have the ability to watch him grow each day when we would have otherwise been at work is a small gift from this shitty situation. He has grown so much before our eyes in these last 6 months and continues to surprise us all each day! Every day is a fun adventure with Little A!
Like everybody right now, we are still figuring out what September is going to bring. I am still not sure if I am remotely teaching from home for most of the semester or not. Jeff will be working from home for the foreseeable future. Grandma is as always an amazing support system and will fill in when we need her. Little A is most likely going to school 3 days a week for 3 hours. We felt comfortable with their plan during the last Zoom call and will find out more this week. As anxious as I am about it, I know that we can’t give him the important social skills he needs at this point at home with just Grandma. She is a miracle worker and a great preschool teacher for him, but she can’t give him what other two-year olds can. He will have speech two days a week still--most likely over Zoom, but that somewhat depends on what his therapist needs to do based on her own kids’ schedules. Look out for another update in the Fall to find out if Little A went to school, how that is going and what our life in this crazy time looks like.
Saturday, July 4, 2020
Book Review (Not really): Normal by Nathaniel & Magdalena Newman
This is not really a book review, as much as just personal feelings as I read the book. I would never be critical of someone else’s journey. The book Normal is a real life story written by a 14 year old with Treacher Collins Syndrome and his mom with the help of the author of Wonder. The boy Nathaniel and his family’s story was featured in a 20/20 Special that along with the book Wonder helped bring more light to TCS and craniofacial differences. At first I did not want to read it and thought why do I need to hear their story when I have been living a life with a child with TCS for 2 years now. My husband though was begging to get the book and read it. I had a gift card to Barnes and Nobles, and agreed to get the book. It took a few days until I could emotionally get in the right mindset to read the book. Once I started it, I couldn’t put it down and finished it in a few days. There were a few parts that I felt I was reading my own thoughts on the pages and other parts that made me grateful for Little A’s journey. Nathaniel was born a lot more severe than Little A; had trouble breathing from the start and had many, many more surgeries. Nathaniel was not born at NYU, but they were transferred there for the help of the craniofacial team. There were two people they talked about from that team that we also met with at our time in the hospital. NP Pat, is like mission control of the craniofacial team and organizes meetings with the doctors and commands many of the everyday operations. She was the one that after a meeting about Little A’s feeding tube, hugged me and reminded me that as a new mommy I need to take care of myself too and it is ok to take a physical and emotional break away from the NICU for a day. That it doesn’t make you a bad mommy, and in fact is quite the opposite. You can’t take care of someone in need if you are not well yourself. Speech Therapist Shelley, is the other name we read in the book and remember our exact meeting with her too! It was quite similar to the Newman’s meeting. Shelley is another face (no pun intended) of the craniofacial team. After a doctor suspected that Little A had treacher collins, Shelley came to our room to congratulate us on becoming parents, give us a little gift and let us know that we are not alone. It was weird reading the book and knowing the exact people they were talking about and how similar our journeys with TCS started off.
As I write this though, a quote comes to mind that I heard many times as a special education teacher of students with autism--”When you meet someone with autism, you have met 1 person with autism.” Meaning every person is different and has a different journey. There are things you can learn from other people’s stories that may help you through your journey, but it won’t be exactly the same. Reading this book has helped me in some ways, and gives me an enormous amount of confidence that Little A is going to lead a “normal” happy life. The following quote from the mom in the book was like someone read thoughts from my mind and wrote it down on the page. I read it over and over and then went to my husband tear eyed and simply stated “She gets it...she found the words for my feelings.” She stated “When I tell you how difficult it was in the beginning, I want to be clear about something: The biggest reason I was so upset by Nathaniel’s birth was because I had no idea what was coming. How he looked and the hurdles he faced were something I could accept and love, but the shock was gigantic. When life takes a sudden unexpected turn, we are asked to show what we are made of. It took me time to find my balance. That can be true in so many ways in life.” This! I don’t have many words to explain this quote or know if it needs to be explained. I loved Little A at first sight and knew I always would love this little boy, but when he was sent to the NICU and then doctors and nurses were throwing around acronyms and words, shock took over. There were times I allowed myself to be upset that things were not going as planned. Then there comes a time when you just dig deep down, lean on your partner, family and friends and find the strength that you need! We are so happy that Little A is our child and feel like the luckiest parents in the world. Although our start to parenthood wasn’t easy, it has shaped who we are as parents and people in general. It has made us realize that we are made up of a lot of love and strength and can get through anything together.
The next quote that really stood out to me was written by Nathaniel himself. “It is weird for me to write this book, about what I’ve been through, when I don’t want people to think about what I’ve been through. We like to categorize people. That’s how Wonder helped people understand me. ‘Oh, there’s a kid like Auggie.’ But I think all of us have parts of our identity that we’d prefer people to see through. You notice how I look? Fine. You have a question or two about it? Sure, okay. But after that, I’d like us to move on, so we can see if we like to play the same games or talk about the same things.” Whenever I am talking to someone new about Little A and they don’t know what TCS is, the book/movie Wonder is my go to too. It is an easy reference if they have read it or seen it and is usually followed by “the severity of it is a spectrum and Little A is not nearly as severe as Auggie” As a teacher, a parent and human being, this quote really speaks to me because no one should be judged based on how they look. I always worry about how Little A is going to be treated once he is in school. Once you get past his tiny ears/hearing aids, Little A is a smart, funny, kind two year old. He likes to do the same things as any other two year old. I know it is human nature to put people in a box and categorize them, but then we might be missing out on knowing other things about that person that makes them special. I don’t mind telling people that the headband Little A wears holds his hearing aids on, but his BAHAs don’t define him. I didn’t mind explaining about the feeding tube, but that never defined him. Right now Little A is only two and kids don’t care about looks (at least yet). They may touch his hearing aids out of curiosity and we just say those are his ears and not to touch and then off they go together to play. I know in the future Little A will have no problem answering questions about his appearance, and like Nathaniel he will just want to go play a game or talk about other things. As Nathaniel also said in the book “Treacher Collins doesn’t define me. What defines us all is how we face the world we've been given. I’m Nathaniel. I’m not normal, and neither are you.” We have already started to make sure that Little A knows he can do anything, be anyone as long as he is true to himself. He is Little A, an amazing, strong little boy, who is going to do wonderful things in the future!